Tuesday, February 1, 2011

"Pain is your new normal"

Sounds like something your sergeant would say during boot camp, right? Well, it has sort of become my motto these past few years! I told my Physical Therapist what I meant, and she got it. My pain threshold has been raised (or lowered, depending on how you look at it) so that I am used to living in the level of pain that I have on a daily basis- it is my new "normal", the new "me".

I hadn't really noticed how used to pain I was until a couple of days last week I realized I had spent a couple hours with NO PAIN (at all!!) and it didn't hit me until the pain started up again. Wow, I wasn't in pain! That's kinda cool! (It's also kinda weird, as it feels like something is wrong with me!) Made me realize how much PT has helped me, and how far I've come since being diagnosed. So I thought I'd do a post about how I came to this point in my life.

When I was diagnosed I had already tried the diet for IC patients. I hadn't tried it consistently, but I hadn't noticed any difference in pain so I didn't think it would help. At that point in my life, I had been living for almost 6 months in a constant flare.

My Urologist wanted me to try Elmiron as the first step in treatment, and recommended doing the diet again as well. She put me on an "off label" dose of Elmiron- 400mg (200mg in am, 200mg in pm), to increase its chances of working quickly. I noticed a difference about 3 months in. I have since lowered my dose to only 100 mg in the am. I am taking Desert Harvest aloe vera pills to help make up the gap. After about a year on the high dose of Elmiron, I noticed bruising on my wrists & fingers (from holding my purse, of all things) and I was also losing my hair- my brush had about twice the hair in it that I normally would. I saw a couple doctors and finally, after a zillion blood tests (or 40 that I know of for sure) they just recommended I lower my dosage, take Vitamin C & Iron, and eat red meat. (Since I'm mostly vegetarian, that last one was laughable, but I have been able to lower my dose, plus I do take low doses of C & Iron.) Amusingly enough, my Uro had been trying to get me to lower my dose, but I had tried & ended up going back up because the pain got worse- then finally, with the AV, I could do it.

The IC/PBS diet, at first, seemed like a miracle. The first full week I seriously tried it was amazing- however, I later learned I was having a "remission" week, and the next week the pain hit full force. I follow some modifications of the diet- I still avoid most citrus, I don't eat anything with any preservatives or additives (Clean Eating) and I won't eat foods that have dyes or colors in them. Aside from that, I've been able to add many "no-no" foods back into my diet. On good days, I eat pineapple or strawberries and can have tomatoes. I can have chocolate! (Though this isn't a trigger food for me- I can have chocolate on bad days even! However, I have learned to only eat organic, high quality chocolate, and I only eat it on "my terms".)

I have to eat a very weird sort of diet, and I have had to live with the fact that for now, anyway, I have to eat some chicken to get enough protein in my diet. (I've had people try to guilt me into being vegan, and I wish I could, but I can't seem to find a balance without meat at this point, and if they could only feel the PAIN that I go through, they might realize why I do it.) In addition to still following some of the IC/PBS diet restrictions, I also have to follow the Eating For IBS guidelines, I try to avoid high oxalate foods because of the vulvodynia and I am also doing a no yeast diet!! (And you thought you couldn't eat anything!) The Yeast Free Diet is the result of me having a yeast infection for over 2 months- it was so bad it had caused fissures in my vaginal skin & harbored itself in there! It was crazy!

I've been on Elavil for over a year now- it was prescribed for the vulvodynia, but it has helped alleviate the IC pain as well. It makes my heart race, so as a result, I have to take a beta-blocker. My biggest worry was weight gain, but thanks to the next step, that didn't happen. It helped me finally get the sleep I needed at night- I hadn't realized the toll getting up to use the bathroom 4-7 times a night was taking on me until my husband's boss told me I looked great without the dark circles under my eyes!

In addition to medication & diet, my Uro highly recommended walking for exercise. It loosens the pelvic floor muscles, and any type of exercise boosts your endorphin levels, which helps with pain management. (Yoga is also great for loosening muscles & I do it from time to time as well.) I went from walking around the block (because I couldn't go too far away from a toilet) to now walking anywhere from 1.5-3 miles a day! Last June I walked my first 5K, and finished in less than an hour! I have lost over 70 lbs! I look awesome, and I love seeing my reflection & going "Who's that- oh wait, that's me!" I feel great too- and I get restless if I can't go walking... which will be interesting these next few days, as we're supposed to get snowed in tonight!

My final step in feeling this great has been through doing Physical Therapy for pelvic floor dysfunction. The therapist I see is amazing. In addition to being a very dynamic person, she is good at discovering personality traits, and figured out that I was stoic right from the start. In addition to helping me learn to relax, relax, relax, she has also shown me that it is ok to show pain & talk about it. She had me describe my pains in very specific ways, and up until that day, Sam had no idea quite how painful sex (in particular) was for me. When I started seeing her my (sexual) pain was a 10 on the scale of 1-10. It is now a 1. ONE!! I honestly wish it was a big fat zero, but perhaps if we keep it up, it eventually will be!

Our insurance didn't cover the sessions very well, but she only needed to see me once a month because I was a motivated patient & also had a supportive spouse. (Random, but did you know that IC patients are 40% more likely to have positive results from treatment if their spouses are supportive? I totally owe my husband for these great results as well! And adore him for believing in me when even my own doctor thought I was making the pain up!)

The key things I've learned in therapy are relaxing, releasing inner trigger points, doing Kegels properly (which doing with biofeedback is kind cool!) and (surprisingly) learning to communicate my pain to Sam, my husband. The therapist recommended this great book: Heal Pelvic Pain by Amy Stein, which, even if you can't afford PT, you should own this book- because it has everything inside to help you start lessening the pain in your life- be it from Endo, VVS, IC or even IBS. (The Resources page on the previous linked website contains a great list of links to help with everything finding therapists who specialize in PFD to finding more information about various pain syndromes.)

I have made amazing strides, and my hope, as an IC patient, is that I can inspire you to continue on your journey. It isn't easy, but it can truly yield great results!!

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